sensory differences

I’ve decided in this entry to answer two questions which are sort of related:

1. Do you have any allergies to metal? by Shawna

2. I’m really interested in your food intolerances: what kinds they are, when and how they occurred, whether you have some medicines that help, etc. And I’m interested if you can tell something about it in general, because I didn’t find any details, I just heard somewhere that malabsorption is a symptom of Asperger’s. by Noemi

Regarding metal, I am guessing that means if I touch or wear metal, as opposed to consuming foods with, say, iron in. I am not aware of any specific allergies, either in eating or in touching, but I actually find it very uncomfortable to wear anything hard, like metal, against my body. So I decided several years ago so stop wearing jewellery or a watch – not that I wore them very much anyway, but when I wore them, I was always uncomfortable. I also find it very distracting – if I wear a necklace, or a bracelet, I fiddle with it constantly. I don’t seem able to simply forget that it’s there.

I think this is quite common with the autism spectrum – it’s part of not being able to filter things out, and as a result being hypersensitive. I try to wear clothes that are comfortable and even – exerting even pressure on my whole body, as opposed to having tight bits around the edges. I also avoid wearing belts if I can – I prefer trousers or skirts that are elasticated.

Regarding food sensitivities, I do have quite a lot of them, although I’ve never had them officially tested. I tend to experiment to see how different foods affect me. I’ve heard that the safest foods – the foods that are the least likely to cause an adverse reaction – are lamb, pears and rice, and that it’s a good idea to start with those and then add other foods one at a time, to see how your body reacts.

I find it can be hard to keep track of, because my body has a lot more sensitivity in the two weeks before my period – a lot of foods then cause me severe abdominal pain. But, at that time, lamb, pears and rice are indeed okay, so I buy a lot of them! I find eggs and bananas and avocados are good too.

But there is a different sort of sensitivity that happens all the time – a more low-level type, that can easily get mixed up with other sensory sensitivity, because it has the same sort of effect. Things like my mind feeling fuzzy or overwhelmed or having difficulty focusing, my body feeling like it’s full of electricity, as if it’s buzzing and quivering inside. It’s taken me a long time to realise that this is affected by the food I eat, but I realise now that it definitely is.

I don’t yet have all the answers – it’s something I still experiment with to some extent. But here is what I’ve found. In order for my mind to feel calm and alert and focused, and for my body to feel calm and non-quivering, I need to observe the following dietary principles:

Try to avoid food with artificial additives and processed food

Eat a lot of fresh, natural food – such as fruit, veg, eggs

Eat raw, unsalted nuts and soak before eating them

Eat small portions

The bit about eating small portions is something I’ve come to realise only more recently. I enjoy the sensory pleasure of eating, and I can easily eat too much. I know it’s very common for people to eat more than they need – but my body and mind really do seem to function significantly better on a minimum amount.

It can actually be hard for me to know when I’m full or when I’m hungry. This is quite common for people on the autism spectrum – to find it difficult to recognise bodily cues. As a child, for instance, I used to often not realise I needed the loo until I was about ready to burst, and then I would often wet myself, because it was too late. I learnt to simply go to the toilet at regular times, to avoid this happening. Often, too, it’s not until I’m sitting quietly writing my thoughts and feelings in order to process them that I realise I’m tired, for instance. I think this is to do with the difficulty the body has filtering things out – I feel everything. My body is full of sensations, so it’s hard to filter out which ones are meaningful, and what they mean. However, I notice that when I eat less, it’s much easier to identify when I’m hungry and when I’m full – my mind and body feel clearer, somehow.

I know I have to be careful saying this, because eating too little can also be harmful. When I say eating less, I don’t mean eating less than the body needs. For me, it’s been more a case of trying to work out how much my body needs. If I am feeling tired and weak, that is not a good thing. But I can feel tired in a different way from eating too much, so I need to find a balance.

I also find it helpful to occasionally have a day or two of fasting, or eating only fruit and veg. This might be seen as strange, as it’s not a common thing in our culture, but it’s something that has been done traditionally in various cultures and religions, and I notice that it gives my body a rest and helps me sleep more deeply, so it is something I like to do occasionally.

People on the autism spectrum can have difficulty with sleeping. I find I sleep very lightly, and can wake up just as tired as when I went to bed. However, when I eat simple, natural food, and eat small portions, I sleep a lot better and am more refreshed when I wake up.

I know that it is quite common for people on the autism spectrum (especially children) to have a gluten-free diet, and sometimes casein-free too, so I should say something about this. My diet is not gluten-free or casein-free. I tried gluten-free once, a couple of years ago, just to see if it would help. I didn’t do it for very long – only a month or two – but what I noticed was that I was still getting abdominal pain with the gluten-free processed foods, and that I didn’t like the texture of gluten-free pasta, and that in general, I found myself feeling grouchy and irritable. I didn’t feel more well or more alert or anything like that. And I found it quite exhausting and depressing to be checking everything I wanted to eat to see if it had gluten in it. Perhaps if I’d done it for longer I might have seen good effects, but I have actually found much better effects on my well-being by simply eating simple, natural foods, including some food with gluten, such as pasta and bread. I am not of course saying my experience will be the same for every autistic person – I can just report on my own experience.

Regarding casein, I actually cut out milk from my diet years ago, simply because I never liked milk, and so it occurred to me in my early twenties that now I was an adult, I didn’t have to drink it any more. And I observed I felt a lot more well in myself once I cut milk out of my diet. However, I continue to eat cheese and yogurt, and have never observed any bad effects from them. I find yogurt helps my digestion, and as for cheese, I simply love cheese.

Something that helps me when I get bad abdominal pains from food is to drink hot water with a couple of drops of peppermint oil. I regularly buy little bottles of peppermint oil from Holland and Barrett.

I have actually started another blog, over on ‘Blogger’ (I wanted to try a Blogger blog, to see how they compare to WordPress) about my attempts to eat simply, and to live simply and frugally. It’s still very much in its initial stages, and is probably more useful to me than to anyone else so far, because it’s helping me track the food I buy and what I eat, and experiment with what works and what doesn’t work. But if anyone’s curious to have a look, the link is http://simplicityandsolitude.blogspot.co.uk/.

As you will see, I don’t always stick strictly to my own rules – I do eat processed food sometimes, especially when it’s on special offer. I find it hard to stick very strictly to a very simple, natural diet. I love crisps (potato chips), for largely sensory reasons, and I’m very aware they don’t have a good effect on me, so it’s a constant struggle for me. Therefore, I try to be a bit flexible in my diet, and not too strict, because I know from experience that if I’m too strict with myself, then I’ll end up rebelling and eating lots and lots of crisps! So I try to be realistic too.

The concept that my experiences of sensory things are different from other people’s is one that simply never occurred to me until I started reading about Aspergers. In the same way that one assumes that, for instance, everyone sees the same colour for what they call yellow, I assumed my senses were the same as everyone else’s.

I have vivid memories of being in department stores and supermarkets as a child, with my family. I would feel a horrible feeling, which became worse and worse and I would then sit down on the floor because it was uncomfortable to stay standing, and I would scream that I wanted to go home. My mother would get angry with me because she thought I was throwing a tantrum out of boredom or impatience. I would say I didn’t feel well and she didn’t believe me, because I didn’t have a fever or look ill in any way.

I had no way of being able to explain sensory overload, and people weren’t aware of such a thing back then. What I was feeling was a sense of being overwhelmed by noises, lights, too many things around me, not having any sense of where I was going or what I was doing, and a dizziness that made it hard to stay standing. I can explain this in retrospect, and I also know in retrospect that the fluorescent lights affect my vestibular system and make me dizzy. As a teenager and adult, there were many experiences in supermarkets where I would become dizzy and start blacking out and have to sit down.

I also have vivid memories of loving to have my back tickled gently. I think it started when my mother did it once, when I was about four, and then I told her to keep doing it, and every evening I wanted her to do it. She wouldn’t always do it, so I tried to get other people to do it. When I started school, I would ask anyone and everyone in my class to tickle my back. Some did it once, but most stopped after a couple of minutes. One girl would do it whenever I asked, for as long as I wanted, until eventually she would say ‘Can I stop now? My arm is tired.’ I would reluctantly let her stop.

However, her tickling sessions were brought to an abrupt end one day. One day in assembly, as she had her hand on my back, tickling away, the head mistress said in a loud, horrified, angry voice: ‘Stop that at once.’ I remember I had no idea that she was talking to us or what she was talking about, but the head mistress then said ‘You know what I’m talking about!’ I didn’t have any idea, but I guess the girl who was tickling my back knew, because she stopped.

As my younger sisters grew older, I would get them to tickle my back, and I would sometimes give them my toys and pocket money in exchange for a tickle. I remember, once when I was six, my mother was tickling my back and I didn’t want her to stop, and she said jokily ‘I need to get a machine that tickles your back forever.’ I didn’t realise this was a joke, and I thought it was a wonderful idea. To me the experience had nothing to do with any kind of intimacy (I imagine in retrospect that the head mistress thought that it was something sexual – that I and the other girl were engaging in lesbian activities at the age of four!). Whether it was a machine or a person would have made no difference. I just loved the feeling on my back.

I give the two very different examples of supermarkets and back tickling to illustrate how, as Donna Williams says, the sensory issues of autism can either be like a private heaven or a hell. This is definitely true of me. Sensory sensitivity can either be overwhelmingly awful, or utterly amazing.

Another example of a good sensory experience is the feeling of sand – lying on sand, pushing my hands and feet into the sand, feeling it’s pressure and it’s fluidity. I have a photo of myself as a child in which you can see how much I enjoyed this.

Whereas normally I would get bored if I had nothing specific to do, I could lie for ages on the sand, just enjoying the feel of my body against it.

An example of a negative sensory experience is bright light. In the next picture, my sisters and I were having our photo taken with our dad, and the sun was in our eyes. This is an unpleasant experience for everyone, but, rather than shielding my eyes or looking away as my sisters did, I became overwhelmed and held up my arms, not knowing what to do. You can see me on the far left, with my arms raised up and my hands stiffened. Somehow my instinct is to push away the light, as if it’s something physical, because it feels like it’s intruding on me, so my arms create a barrier around me. It’s the same even now if there is a flash of bright light or a loud unexpected noise. I know it is illogical, but it is how my body reacts, because it doesn’t integrate the senses very well and have an instinctive sense of what to do.

As an adult, since I have read a lot about Aspergers and difficulties with sensory integration, I have some strategies in place to help. For instance, I have Irlen tints on my glasses, which are very soothing and stop light being so intrusive. I wear a cap to limit how much I see, and to shield my eyes a little from light. The more overwhelmed I am, the more I push down my cap, so my field of vision is smaller, and so there are fewer things to overwhelm and distract me. When I go into a supermarket, I make sure to go through it very quickly, and I try to be aware of my dizziness levels, and if necessary to pay for my groceries and leave before I’ve picked up all I planned to buy. I have some groceries delivered, to save trips to the supermarket. I make sure to have at least one day a week where I stay at home and rest. I am aware that I’m a lot more sensitive to sensory stimuli when I’m tired, so I make sure to have enough sleep. All these things help reduce unpleasant sensory experiences.

I also find ways to create good sensory experiences – not only because they feel good, but because they help with sensory integration in general and they help to reduce the discomfort of unpleasant sensory experiences. I have massages and also I have cranial osteopathy. I also used to go to a flotation tank where I used to live, but there isn’t one where I live now. All these things are quite expensive, so I have to budget and I can’t do them as often as I’d like. As a cheaper alternative, I buy aromatherapy oils and massage myself. I also burn my aromatherapy oils in an oil burner, because I love certain smells, especially the smell of lavender. As a child I used to pick lavendar all the time and put it in a bag and spend a lot of time smelling it. It’s a lot more convenient as a smell in the air from an oil burner.

I have realised that I like a slight pressure all over my body – in the same way that Temple Grandin likes a ‘squeeze machine’. So I tuck my duvet into my bed very tight (you can also get weighted blankets, but that is expensive and I don’t have much money, so I tuck in my duvet as an alternative way to exert pressure on my body). Somehow it is calming. It also makes me more aware of my body boundaries – where my body is in space. A common aspect of Aspergers is poor proprioception – difficulty perceiving exactly where one’s body is and where the boundaries are. I also like to wear clothes that exert a gentle pressure which is the same all over, rather than some parts that are tighter. I really like to wear soft tights or leggings – and I make sure to get a size too big for me, so they aren’t uncomfortably tight.

I could say a lot more about sensory issues, as they affect me quite a lot, but this is just a general introduction, giving some examples to give a sense of what it’s like and the variety of sensory experiences one can have. I will write more entries on sensory issues in future.